Voices on Cancer: Why Cancer in Young Adults Is Different, with Matthew Zachary

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. In this Voices on Cancer podcast, young adult cancer survivor Matthew Zachary shares his advocacy story and shares tips to help advocate for young adults with cancer.

Transcript:

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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. In this Voices on Cancer podcast, young adult cancer survivor Matthew Zachary shares his advocacy story and shares tips to help advocate for young adults with cancer.

Diagnosed with brain cancer at 21 and given just six months to live, concert pianist and advertising and branding veteran Matthew Zachary is the Founder/CEO at Stupid Cancer, a charity that comprehensively addresses young adult cancer. He is also the Founder of Instapeer, an anonymous, evidence-based mobile matching and messaging platform for oncology patients, survivors and caregivers.

ASCO would like to thank Mr. Zachary for discussing this topic.

Matthew Zachary: Hi, this is Matthew Zachary. I'm the founder and CEO at Stupid Cancer, which is the largest non-profit that is comprehensively addressing young adult cancer. It is April of 2017, I'm proudly celebrating my 21st year in remission from terminal pediatric brain cancer, and here's my story. I was a concert pianist, born and raised in New York City. I was going to grad school to write for Hollywood. I wanted to compose and be Jerry Goldsmith and be John Williams.

And during the summer of 1995, my left hand started to experience some tingling. And I didn't know what that was, I was an ignorant 21-year-old, just living his life, being invincible and invulnerable. I got back to college in September of '95 and I couldn't play. My left hand just wasn't working, and I had fine motor coordination problems, and I couldn't arpeggiate, for those out there that are musicians. If you're not, “arpeggiate” just means to play notes very fast.

So I went to the doctors on campus over and over again and they kept misdiagnosing me with everything from Carpal Tunnel to Epstein Barr, to-- I was eventually given Robitussin for if I had the flu. And it turns out I had a brain tumor. So I got back after the semester, had an MRI, met some doctors and poof, they found this golf ball inside my brain. So everyone was like, "Well, what did you do?" I was actually pretty relieved that there was something there but at the same time they gave me sort of a grim prognosis. When you get a pediatric tumor when you're not a kid, it has different outcomes, it's not very well measured, they don't have long-term projections. And it was relatively disastrous.

And to spare you all the details, I did survive against pretty much all the odds and we don't know why but I just happened to do that. But I was too sick to go to grad school, so everything I had been studying for, for the past decade, was obliterated. And back in the '90s there was no such thing as survivorship or quality care or they didn't really pay attention to you, personalized medicine.

I'm 22 at this point. I couldn't play piano. I was bald, I lost all of my hair on my entire body. I was impotent. I was infertile. My friends went off to grad school, or they abandoned me, and I was just left to be whatever the world needed or wanted me to think that I could do, which was pretty much nothing. My family was amazing, the friends that did stick around were amazing, but I was entirely alone. And it was horrible to not even know, what I then soon learned years later, that there were other young adults who beat cancer, that I would have liked to have known about and I didn't.

Instead of going to grad school, I went to work in the advertising industry for about 10 years and it was along that path that I, first and foremost, rehabilitated my ability to play piano. I released some CDs. And it was like, if man plans and God laughs, then I laughed because I got to release 2 CDs and took back what the cancer was going to take away from me, back when CDs were a thing in the late '90s.

But at the same time, it took me 7 years to meet another human being who beat cancer in college. And when I did that, he happened to be an advocate in DC for childhood cancer. So he pulled back this curtain, and there were all these organizations I'd never heard of before that I was so angry that no one told me about. And yes, this was before Google and before Yahoo and then the web was its own little universe back then. But still, I felt like I deserved the right to know that these things existed and no one told me. And they were available at the time when I was diagnosed, just that I wasn't told.

So in meeting this young man, it introduced me to the role of cancer advocacy and I didn't know what that word meant. Advocacy to me meant being a congressman or talking to some sort of lawmaker. And at the end of the day, I realized that what advocacy meant to me was I can now make cancer suck less for the next me, the next 21-year-old who's not made aware of things that can make their lives better. This really wasn't about hoping my cancer would ever be cured or anything like that, but if I could make one day a little better than the next for someone else just like me, that's what it meant.

So I started to learn a lot about what was going on in cancer in the early 2000s. And I met a lot of the leaders who we all know today, highly Googleable people, at the National Cancer Institute and the Livestrong Foundation and the American Cancer Society, and I felt like I got cultivated a little bit into becoming an advocate for young adults and I credit a lot of people for helping open that door for me.

So in 2006, I think the lightning rod was hit when a report came out from the NCI and the CDC, the Centers for Disease Control, about how outcomes in young adults were outrageously disproportionately horrible to other age groups and that there was this call to action to understand young adult cancer as a completely different species in cancer. There should be pediatric cancer, there should be young adult cancer, and there should be older American cancer. And that wasn't the way it was, it was you're a kid or you're not. And that was no longer acceptable, because young adults like myself when I was diagnosed have very different needs, you're at a different stage of life. And when you get diagnosed at 75, it's a very different life experience than when you're diagnosed at 21.

So I then went on a quest to figure out what was missing in cancer for Gen X at the time. I was 31 years old at the time, I was 10 years out. And I just wanted a community for me. And I had met some really amazing cottage industry dwellers of this nascent young adult cancer universe but there really didn't exist a community. I come from advertising, so we say a brand.

And I guess that's what inspired me to start Stupid Cancer, in the fall of '06. We launched it 10 years ago this past January, so Stupid Cancer is now in its 10th year of existence. And it was founded on the very simple premise, to give Gen Xers permission to be ---- because we didn't ask to get sick and we're too young for this, but a path to feel like you can make a difference for the next you, and a way to help yourself feel better about what you're going through today. It wasn't about cure, it wasn't about prevention, it wasn't about risk reduction, it wasn't anything other than, how do you live a better life today because that's all you've got to live with.

And over the past 10 years, Stupid Cancer has grown based on what the community needed it to become. And now we're working in actual academic research, but not cure-based research. We're really now measuring how much we make cancer suck less.

A good example of that, which is really an amazing narrative into why young adult cancer is different, is fertility. And it's often something that I have to talk about when people ask, "Well, why do you focus on young adults? What's so special about that?" I said, "There's nothing special about young adult cancer, that it's not a contest between kids and old people. It's that it's different." And when you address things based on life stage, you can achieve better outcomes than casting this wide napalm bomb that hopefully everything grows back the same way.

I was 21 and I was made aware to bank my sperm because I was in pediatrics. And pediatrics is its own universe of best practices, because it's had 30 years of addressing the issue. But most people that are 21 are not diagnosed with pediatrics. And we just conducted a study, an academic study, that got peer reviewed and published, that concluded more or less that of all the women diagnosed in their fertile years—this is 2016—of all the women diagnosed in their fertile years only 13%—I'll say that again, 13%—reported being made aware, or informed, that their cancer therapy, whether it's surgery, radiation, chemotherapy, immunotherapy, stem cell transplant, bone marrow transplant, would affect their ability to be a mom one day. 13% were made aware. 87% of women were made unaware that there was any risk at all to their fertility.

Now clearly, fertility is something that doesn't happen when you're 6 or 60. For women, it is something that matters in your fertile years. So we're now developing programs and best practices and educational workshops to change physician and HCP behavior, to direct them more toward the age relevancies of their patient first, and the disease relevancy second. Because at the end of the day, if Stupid Cancer is responsible for more parents out there, then we've done our job. And that is the specific reason why Stupid Cancer exists today, is to empower those affected by young adult cancer.

We have two other amazing programs that I'm very proud to talk about on this show, the first of which is our international convention which is called Cancer Con. Cancer Con for 2017 is the 20th event we've produced in 10 years. And it is the most incredible experience for young adult cancer, with over 600 attendees coming from all around the world, with doctors, and researchers, and 50 young adult cancer organizations as exhibitors, corporations and industry coming together to advance the cause. So cancercon.org is the place to find out what the event is.

And we have a mobile app that addresses young adult cancer in a very unique way, such as how do you find out that there's another person like you without happening to stumble upon them somewhere on the Internet or on Facebook?

So we developed a mobile app called Instapeer, which we're relaunching to Version 2, which is nothing more than a mobile app peer support finder. And it helps you connect with people like you who've been there and walked in your shoes, and it's anonymous so you don't have to feel stigmatized. And it's age appropriate because you don't necessarily want to meet people that are 65 years old, you want to meet people that are your age, and it knows that. So the relevancies here are so specific to how do we actually improve quality of life for young adults, that the app is evidence-based. And it's nerd speak for we know how much it improves anxiety, and depression, and sense of self, and quality of life, and empowerment. These [inaudible] that have not truly existed in the young adult cancer space in any meaningful form. And we're very proud to be partnering with dozens of academic centers, including the National Cancer Institute and the Office of Cancer Survivorship to be a power player in the space. This is a generation—that I've aged out of, so now we're largely focused on millennials—that deserves better. No one should be made unaware of the age-appropriate resources that they're entitled to, to get busy living.

I guess the last piece that I'll talk about is how much progress we have made in pediatric cancer, because I am a product of long-term pediatric cancer care. There's nearly 450,000 Americans who beat cancer as a kid, and “kid” meaning under 15. Now, of those 400,000 Americans who beat cancer as a kid, they're all under 40 today. There's nearly half a million Americans who beat kid cancer that are part of Stupid Cancer because, as we now know from tons of data, tons of longitudinal research, cancer's the gift that keeps on giving. And when the doctor says, "You're cured," that is not the end of the story. So many of these young adults now who beat cancer 10 and 20 years ago have late effects, and they need a community that understands them. They may not have cancer today, and they may have had it 20 years ago, but they're still infertile and impotent with cardiomyopathy and diabetes and they're in menopause. So this is the community that needs attention and that's our job, and that's our responsibility.

So if you or someone you know is a young adult affected by cancer, or you're intrigued and want to learn more about what the young adult cancer movement is and how you can help, please check out stupidcancer.org. We have many different ways to get involved in what we do. If you work in academia, we'd love to partner with you on some longitudinal research outcomes data.

If you are looking to start a non-profit, please consider the value of what that means and what you want to get out of this situation. There are many non-profits that do great work in the young adult space, and I always encourage people to look at those options first and contribute to what can be more successful today. There are ways to just go back to your doctor, and say, "Hey, I'm a young adult, I didn't feel like I was treated appropriately."

If you discover Stupid Cancer or other organizations that we work for and say, "Hey, I wished I knew about that and I wasn't aware of it," you have the opportunity to go make people aware of it and talk about why your cancer at your age is different, and again, not special or better off than anyone else. You had cancer at an age where it's different. So the more voices we get that talk about why young adult cancer is different, the more long-term pediatric cancer survivors we get, the more caregivers who are there for us that know what it means to be different in cancer by age, that is going to drive the change we wish to see.

It's been my honor and pleasure to share these all with you today on the podcast and I encourage you to have a look at stupidcancer.org, and take an active role in making cancer suck less for the next generation. This is Matthew Zachary, founder and CEO of Stupid Cancer.

ASCO: Thank you, Mr. Zachary. More stories and tips from patient advocates can be found at the Cancer.Net Blog at www.cancer.net/blog.

Cancer.Net is supported by the Conquer Cancer Foundation, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high-quality cancer care. Thank you for listening to this Cancer.Net Podcast.

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